stress/flare but good coming out of it slowly

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Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 5/14/2007 12:21 PM (GMT -7)   
Hi everyone,

Just an update. I know I don't post very much but I do read to keep up with what is going on with everyone. I am officially moving into my own new apartment and seperating at this time. I am so excited and scared all in one. :) Nervous with panic attack one moment, but happy and extatic for another. eyes Long story but there is alot to do so I will be doing it over the ourse of a week. The down fall is I have doctor appointments, and must be out during the day. Since I am so sun sensitive, I had to be out in the sun today and feel icky, but I had to get an air conditioner unit to move, so all feels like it is a double edged sword. Also the apartment has this nasty bad faux paint job that I will have to paint over, so yes this sounds goofy but, I was cannot pick a color, LOL. I have been pacing myself and buying the things I needed over a month's time, and trying to do it economically too. I just want to get my stuff in there, later when I have things there I can deal with the unpacking. I will be moving near friends and the art community so there is alot of good coming out of this. Just scared and nervous but happy for some breathing room, you know. I need time to sort things out until I know what I want to do and to get myself better. The longer I live with someone I cannot trust, the more sick I am becoming. But all is working out and I have alot of time to do my artwork, think, and just rest for once. Anyway sorry to vent. Thanks all for everything. I hope you all are feeling well, and are pain free soon.

Leta
sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 5/14/2007 12:37 PM (GMT -7)   
Leta, thanks for the update. It sounds like you have a lot going on between moving, the separation, and you appointments. I hope the separation turns out to be a positive thing in your life and that you have the time and energy to do the art kinds of things that you enjoy. I also hope that now that you have a good team of dos working together that they will help get your health on track.

Don't worry about posting much, just do it when you are feeling up to it.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Co-Moderator: Lupus and CFS Forums



mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 5/14/2007 3:39 PM (GMT -7)   
Hi Leta,
  (((Hugs))) I hope your move goes well and you can get plenty of rest and enjoy your art once your settled. Good luck with your appts and I'm glad to hear you will be near friends in your new place. Take care, rest, relax and enjoy. Update us when you can. You will be in my thoughts and prayers.
                                                         Love ya, Babs
 
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/14/2007 4:10 PM (GMT -7)   
Hi Leta, There is nothing more liberating or healthier than getting out of a bad relationship and moving on with your life. Being scared and euphoric is better than being unhappy and miserable and in a dead-end relationship that can poison your health. It's great that you're going to pace yourself, and in that you're going to be close to your friends in the art community, I'll bet it won't be hard to find folks to help with the painting and decorating so you can conserve your energy. I was surprised at how much my friends were always willing to help me.

I left a 23 year marriage 25 years ago and I have never looked back...not even for a second. So go for it!

I do know you'll take care of yourself and come back here when you need help or someone to listen to you vent. We'll be here for you.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/14/2007 4:12 PM (GMT -7)   
Opps, I meant I left a 23 year marriage 15 years ago. I sure don't need to add TEN more year to my life!
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 5/14/2007 7:34 PM (GMT -7)   
Well -- adding 10 more years to life isn't bad, but I'd rather not add 10 years to my age!

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
OTC Daily: Multivitamin, Calcium, B-12, C, D; As Needed: Ibuprofen, Tylenol Sinus

Allergies: All Sulfa-based medications; Levofloxacin,  Levaquin

DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 5/16/2007 9:23 AM (GMT -7)   
Hey everyone,

Thanks so much for the kind words of love and support. I am started moving stuff in Monday, two carloads full. Hubby has sinus infection and says for Saturday I will try. Whatever, I told him I cannot bank on I will try. I told him I feel sick every day and a sinus infection for me much worst than usual person. Of course no response. So now I am trying to figure out how to move some of my stuff. I know a good friend will help as will another, but I have an armoire to move and may only cost me a bit more to buy a new one than to move it so will decide tonight. I am still trying to save money on blinds to make apartment dark since I cannot be in the sun at all. Sigh eyes redface I am tired, flaring bad and some how finding the strength to get this done. I will be moving another carload today and a friend of mine is helping me unload tonight. He knew me before I was sick and has been friends with me for 14 years. Met when I was 19 and has been an awesome mentor to me. He also helps me with buddhist studies, and has kept me on track the past few months when I found out hubby cheating on me. It is wild because all male friends have been wonderful. They are mad at him yeah I cannot wait until I can stay first night in own place. It may need painted and unpacked but it is mine!!! I am sorry I am not responding much but I hope that will change once I move and get internet.

Love to all, and I hope you are feeling better and pain free. :-)
Leta
sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.


monkeyme
Regular Member


Date Joined Mar 2007
Total Posts : 153
   Posted 5/16/2007 9:51 AM (GMT -7)   
Leta

Change is exciting and frightening at the same time. And for sure, it is EXHAUSTING : ) Try and get your rest. Remember to eat and drink lots of water. Enjoy each and every moment.

You sound very strong, I am sure you are going to do wonderful.

You mention photo sensitivity, can you tell me what symptoms you have with that?

Wishing you all the best in YOUR new home : )

Darlene
Chronic Fatigue 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007


Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 5/16/2007 11:15 AM (GMT -7)   
Hi Darlene,

LOL, I just sat down to rest a bit after packing up bathroom, and I see your post reminding me of the stuff I know I will forget!!! Thank you so much for that.

Your question on photosensitivy, if you read my illnesses below my signature, it shows the Lupus, Sjogren's Syndrome, Porphyria, and possibly have PMLE, which is debatable. With Lupus alot of people with Systemic should avoid the sun at all costs. It makes me sick, and long term can throw in severe organ involvement. With Sjogren's Syndrome, one of the anti-bodies I have causes this big time, the RO/SSA antibody is definitely a huge factor in this as well. Then the third lovely thing is the Porphyria, this is an illness in which someone is lacking an enzyme that is used to transport iron through the body. If you are deficient in one or more of these 8 porphyrin enzymes as they are called, you will more than likely develop that form of Porphyria. We are not sure which enzyme I am deficient in, but my form is an acute form with Photosensitivity, so either Variegate or Corpo is likely. I have issues with possible iron overload, but then go to enemia, don't ask how because I don't know either.

Symptoms-well, I hope you have alot of time to read about this. I get severe red butterfly rash within minutes, even with spf 60, full cover etc. I always wear a baseball cap, long sleeve hoody, crank up the air in the car, and even have my windows tinted. I get hot, sweaty, have had heat stroke, rashes everywhere, but not just one kind, LOL, about 3-4 ones depending on which is bothering me of the 3 with the sun, or if all three are. My skin is bright red on fire with sunburn longer than an hour, and I itch fiercely. I can take antihistamines for some relief, but they make the sun sensitivity lighter. I have severe body pain, abdominal pains from Porphyria, anxiety attacks-Porphyria, Psychosis-Porphyria, mini seizures-Porphyria, bone pain-Porphyria, swelling like severe allergic reaction-Porphyria, migraines, vomitting, vertigo/dizziness, constipation or severe bowel movements with IBS, severe muscle pain or deterioration, and severe drop in glucose levels. We use glucose/sugar/dextrose to keep in my body to control the pain and keep the iron from entering my liver too much. So far my liver is healing.

I don't know a day that is pain free but through a raw food diet, and walking it helps. Alot of the meds used for Lupus I cannot take due to the Porphyria. I am lucky I tolerate the Plaquenil. Most pain levels are a 6-7 but when at a 9 for a few days I am gone to crabbiness. I just got out of the hospital two weeks ago, but man I feel better. I hide in the dark, literally and must keep my home completely black. 15% of people with Lupus and this Sjogren's Syndrome antibody have Porphyria and do not even know it. If they would test people could be taken off the dangerous meds and could get things under control.

I hope this helps you. If you have anymore questions let me know. Thanks
Leta
sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.


Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 5/21/2007 4:51 PM (GMT -7)   
Hi everyone,

Just wanted to let everyone know I am moved. But boy am I feeling it now. Tired, moody, no one can please me LOL. The only one who can is my new furry friend-Loki, my beloved ferrit who gets into everything and anything and loves me for climbing. He is awesome and named after the Norse god of mischief. Very appropriate for him. I saw my PC doc today and she is putting me on Iron from natural food source instead of prescription which is awesome. She is worried about my stress levels. I love her dearly. Anway just checking in. I will be without internet for a while so as I am feeling ok will come to the local coffee house for it as I can.

Love always,
Leta
sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/21/2007 6:01 PM (GMT -7)   
Leta, no wonder you are tired and moody. Just the thought of moving would be enough to send me over the edge. I am so happy you have finally moved and hope your flare subsides real soon. Thanks for letting us know.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 5/21/2007 11:32 PM (GMT -7)   
Hi Leta.  I just wanted to wish you peace and contentment in your new place.  Also, Loki is a great name for a ferret!

Dx: SLE with CNS, major depressive disorder, diabetes, Sjogrens, fibromyalgia, asthma, gerd, sleep apnea, hypertension, IBS
Tx: plaquenil, methotrexate, prozac, lamectil, flexeril, celebrex, lisinopril, lipitor, nexeum, seroquel, advair, actos, arthritis tylenol, ambien PRN: prednisone, neurontin, promethazine, xanax, albuterol
supplements: multi vitamin, C, flaxseed oil, calcium/D, low dose aspirin
             Better living through chemistry :D    Donna
 

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